Over the past few years there has been an unprecedented surge in migraine advocacy and education. On an almost monthly basis WHEF leaders have advocated at key events that brought together stakeholders and experts in the field. WHEF leaders have influenced policymakers, media and medical leaders in US, Europe and Australia.

WHEF is the only organization engaged in all five key major international coalitions: CHAMP, IHS GPAC, EMHA and WHAM. This allows us the unique perspective and ability to learn from global best practices, engage with world-leading experts, and more effectively empower our communities.

The leadership team are among a handful of patient advocates who are regularly invited to participate, moderate or speak at key stakeholder meetings like CHAMP, WHAM, GPAC and AAN.

Below is a small sample of some of our advocacy activities.

Paula Dumas and Karl Dumas attended Headache on the Hill in Washington, DC in February 2019. They charged the Hill along with 170 fellow advocates lobbying Congress for 2 asks:

 

1. For NIH to issue HEAL Initiative RFAs to expand research on headache disorders.
2. To include a blue book listing specifically for headache disorders. Angie Glaser of Migraine Again shared her patient story at the Headache & Migraine Policy Forum breakfast.

A Global Patient Advocacy Coalition (GPAC) has been put together as a special working group under the International Headache Society. This is a cross-functional group of patient advocates, doctors, specialists, industry stakeholders, patient organizations, and groups like the World Health Organization and the World Federation of Neurology.

The Migraine World Summit is a coalition member and Carl Cincinnato attended the recent meeting New York. The coalition’s goal is to provide tools, resources, and best practices for advocacy efforts around the world.

Paula Dumas was one of the select few patient advocates who had the opportunity to speak to the Institute of Clinical and Economic Review (ICER) directly about the importance of making the new category of CGRP treatments available to all. Her input along with other patient advocates and experts at the meeting played a critical role in determining the diagnostic codes eligible for insurance coverage of this new category of treatments.

Carl and the team from Headache Australia participated in the launch of a government advocacy engagement event in Australia’s capital city, Canberra. Deloitte published a Whitepaper called “Migraine in Australia” which revealed the staggering toll of migraine in country. More than 4.9 million Australians, over 20% of the population, are affected.

Each year migraine costs $35.7 billion dollars (AUD). The biggest cost is paid by the government. Parliamentarians met patient advocates and doctors and learned that addressing migraine is good not only for patients but for government.

Paula Dumas spoke on behalf of the migraine community at the National Health Research Forum in Washington, DC, presented by ResearchAmerica! Speaking on a Brain Health Panel in front of a live and simulcast audience, it was a unique opportunity to raise awareness among policy leaders and fellow panelists Francis Collins MD, Director of National Institute of Health (NIH) and France Cordova PhD, Director of the National Science Foundation (NSF).

Carl Cincinnato attended the first Stigma Symposium for migraine in Washington, D.C. The event was hosted by CHAMP. The symposium united key stakeholders including leading academic experts on stigma disease and directors of anti-stigma campaigns. Following the symposium, a white paper summarizing the discussion and key findings will be released. This will highlight proven strategies to combat stigma and a roadmap for advocacy organizations to reduce the stigma of migraine disease.

CHAMP held another meeting recently in Scottsdale, Arizona, where Carl Cincinnato, Paula Dumas and Karl Dumas, along with a dozen more representatives attended. They reviewed the progress on current challenges and divided into subcommittees to address anti-stigma, communication, and public policy.  In addition, CHAMP members benefitted from professional media training to improve our ability to tell our migraine stories to the public.

Wendy Bohmfalk, Director of Operations, attended the first Retreat Migraine. More than 150 people gathered in San Antonio, TX, for the patient conference. Produced by CHAMP, the three-day educational event aimed to connect those with migraine disease with information, resources, and each other.

Wendy spoke about WHEF and the Migraine World Summit to the assembled group. Wendy is pictured with two Migraine World Summit team members, Kellie Pokrifka and Elizabeth DeStefano. Angie Glaser and Megan Howard from MigraineAgain.com also participated.